“Be frank and realistic.” An interview with Valerie Seiling Jacobs

Valerie Seiling Jacobs practiced law for over 20 years before fully turning to writing; she is the author of “Packing for the Ineffable,” which appeared in the New York Times, and numerous essays on politics, the environment, and family. Jacobs currently teaches at the Westport Writers’ Workshop and holds a fellowship at Columbia University, where she is working on an MFA. In “A Better Place,” Jacobs attempts to secure for her father the best possible care and a dignified death—endeavors that the medical institutions are often unable, and occasionally unwilling, to provide. Interview by Chad Vogler.

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Why did you focus on your interactions with the health care system, rather than on the particulars of your father’s illness?

I wanted to write about the experience in a way that would reach the greatest number of people, and since I think the problems with our health care system, and the way we deal with end of life issues, transcend any particular disease, I chose to focus on the health care system.

Do you feel that your essay presents an objective or subjective view of the health care system? Did that perspective allow you to create emotional distance between you and your father’s death?

I guess that I would have to say that it is subjective. After all, I can only tell “my side” of things. And I suspect that my syntax and the way I framed the story makes the essay subjective as well. On the other hand, there are so many stark facts (i.e., things that cannot be controverted) in the essay, that I think the essay presents a very realistic picture.

As for emotional distance, I’m still not sure that I have it. Writing the essay certainly helped me organize my thoughts, and it’s gratifying to think that others might learn from it, but the whole experience still haunts me.

One of your early scenes occurs in a bewildering, overcrowded emergency room. What compelled you to research the hospital and, more generally, the medical profession?

As an attorney, I am always aware of being able to back-up what I say. So I made sure to do some research to verify what I had always heard and believed (i.e., that it’s more dangerous in hospitals in July and August). I didn’t want to write a piece that perpetuated a myth (though I must say that the research is not absolute on this point).

As for the research regarding the ER itself: again, I was concerned about being accurate, especially since more than five years had elapsed since my father’s admission. So I went back to verify that my recollection was correct and discovered that they had subsequently expanded the ER—which not only confirmed my memory, but also gave me more background information on what had led to the overcrowding in the first place.

Can you say a little about the ways you integrated this research into your essay?

Actually, I wrote the story first and then went back and tried to insert the statistics and other data—which turned out to be tricky. I was constantly worried about losing the narrative flow or striking too formal a tone (i.e., compared to the relatively informal voice of the narrator). I must have gone through five or six drafts of each “researched” section before I was satisfied.

You mention that doctors and medical staff may have been intimidated by your being a lawyer. Would you talk a little about other instances, either subtle or explicit, that led you to feel that this was an issue?

There were a few instances where I felt that my being an attorney may have affected the way that other people responded. (For example, the folks in the admitting office at the nursing home were extremely skittish when they learned that I was an attorney, especially after I refused to let my father sign certain documents.)

But on balance, I think that being an attorney was a good thing. It meant that I understood the fine print and, because I had worked as a corporate attorney in a health care related industry, I knew how things worked. So I think I was able to advocate for my father in a way that perhaps a lay person wouldn’t have been able to do. On a personal level, however, I think that being an attorney made my failures more frustrating. In other words, I kept thinking that I should have known better (e.g., when it came to asking about IV morphine or hospice).

In retrospect, do you feel that the frustrations experienced by you and your father could have been avoided? If so, how?

It’s funny, I just spoke about this at The Examined Life Conference (in Iowa). And I think the answer is “yes.” I do think that some of the frustrations could have been avoided if I had recognized in real time that we were “at a crossroads.” Perhaps then “we” would have been able to think about other options and consequences.

I realize that recognizing those moments at the height of the crisis is difficult, but I think that if we start to train people to be alert to these decision points—particularly when it comes to “treatment” (e.g., chemo v. radiation v. palliative care) and “place” (e.g., home v. hospital v. nursing home v. hospice)—then I think things may improve.

Where do you feel that communication between end-of-life patients, their families, and the medical establishment could be improved?

I think there are two main problems: first, physicians are reluctant to say when it’s time for palliative care and/or when the benefit to be gained from a treatment is not enough to justify its “cost” (and I don’t mean the financial cost, though that could be an issue as well—more on that below). Sometimes, what a patient can expect to gain from a treatment is so minimal that it seems silly, or even cruel, to put the patient through the physical ordeal—but the doctor is reluctant to admit that. And when a physician holds back that kind of information, it gives the patient unrealistic expectations and prevents the caregiver(s) from being able to have frank conversations and/or to make decisions based on likely outcome. As I said in my essay, everyone becomes complicit in the charade.

In my father’s case, the doctors were still recommending a hormone-type drug regimen (at $1500 per injection—which everyone kept telling me Medicare would pay for) even after the cancer had spread and everyone must have known it was hopeless. After that, they prescribed daily radiation—which entailed putting him in an ambulette and transporting him to and from the hospital—which was excruciating for him. But Medicare paid for that too. (I could kick myself for not putting my foot down and saying “no.”)

And that leads me to what I think is the second problem: namely, the way we reimburse doctors and other health care providers. In retrospect, it probably would have cost Medicare a lot less to provide my father with round-the-clock palliative care at home than it did to provide him with all that medication and radiation (not to mention the cost of the ambulette, which was outrageous). But our reimbursement system is so “procedure-oriented” that no one has any incentive to bring costs down.

But now I’m starting to rant….

How do you think a person can plan for the best possible death?

I am not sure I have the magic answer, but I guess I would do the following: (i) demand that my doctors be frank and realistic; (ii) have my affairs in order (a living will, etc.); and (iii) talk more about death now, so that when the time comes, no one is embarrassed to talk to me about it (or to raise the idea of hospice, etc.)—so that I’ll get to say good-bye.

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Chad Vogler is an editorial assistant at Creative Nonfiction and a graduate of the University of Pittsburgh’s MFA program in poetry.

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